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Recurrennce Question

Glad to be done's picture
Glad to be done
Posts: 569
Joined: Jul 2012

Being new here and NED for just a couple months I have a question. I have read that some of you knew your OC was back. How did you know? What were your recurrence signs? I hope and pray it will not come back but I want to know what I should be watching for since I had absolutely no symptoms of it to begin with. OB just thought I had a ovarian cyst till it kept growing and growing.....

Thannk you for any advice

mom2greatkids's picture
Posts: 528
Joined: Jun 2011

I had no symptoms with my recurrence this summer. After 9 months of remission, a pet scan showed a lymph node near my collar bone. All this with a normal CA-125. It's different for all of us. I hope your insurance will allow you to have pet scans. My abdominal CT was clear. Hoping you never have to deal with this beast again.


kikz's picture
Posts: 1347
Joined: Jun 2010

but my CA 125 tripled, then doubled again and a petscan showed a tumor near my liver. As with many others, my initial symptoms before diagnosis were minor and yet I was Stage IIIc. I have been told that the CA 125 is a good marker for me so I wouldn't expect to get to the symptomatic stage without my numbers indicating something was going on. Then again with this disease, who knows?

Enjoy today. You cannot control what will happen. I am enjoying each day even though I have recurred. I still feel great and have minimal side effects from the medication I am taking. I consider this a golden time because I do feel good and I don't want to contaminate today with worries about what could happen tomorrow.

I wish you a long, long maybe even forever remission.


poopergirl14052's picture
Posts: 1185
Joined: Nov 2010

You will know. Also your ca-125could be a sign. not alway though. Congrats on being NED! .Enjoy and live it up....Val

Felicia_205's picture
Posts: 79
Joined: Jun 2012

I always know almost immediately when I have a reccurence. I can just feel its presence inside of me. If you had know symptoms though then if you have a reccurence they will find it on a ct or on your blood test.

Mwee's picture
Posts: 1341
Joined: Nov 2009

I went over 3 years before my recurrence and my CA-125s started rising slowly and my then one day I noticed a hard lump (a lymph node) where my right pelvic side and leg meet. You are so right when you say that most of the time there are little or no symptoms. You'll be being monitored by regular ONC visits and there is not a one of us that was or is NED that doesn't feel anxious with the nearing of those! But, they don't call it Dancing with Ned for nothing. My advice is to try and allow yourself time to be anxious at approaching appts., etc., for it's only normal, but work at truely enjoying and embracing your day to day life. We all now know just how precious our lives are so...... Dance on!
((((HUGS))) Maria

lulu1010's picture
Posts: 367
Joined: Feb 2011

I get constipated and I am not constipated when I am ok. Even the CT scans dont pick it up right away. My ca125 goes up also

Posts: 5
Joined: Jan 2011

I was NED for 14 months. My CA125 had gone from 11-20. I just knew something didn't feel right. For a few months I told myself I was being paranoid. During physical relations with my boyfriend there was some pain. I knew then I needed to get scanned again. There are no real answers..just keep listening to your body and I hope you are NED for the rest of your life!

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